Just completed initial course of b12

[Mrs_]

Hi everyone,

Just wanted to get everyone views on having your b12 injections every 3months. Is this enough? Today is the first day I've not had an injection and I'm tired and keep getting intermittent tinntus. Is there anything I should be doing to increase my levels in between injection?

Thanks in advance x

[Foggyme Administrator]

Hi Mrs_. I notcan from your previous posts that you have B12 deficiency with neurolgocal symptoms.

The treatment regime for those with neurological symptoms is more intensive than the 'usual' B12 treatment regime (which your GP seems to have put you on).

Those with neurological symptoms due to B12 deficiency should receive the 6 x loading dose injections and then continue on every other day injections until no further improvement - sometimes for many months. Many GP's have not heard of this regime...and some assume it's only for those with PA. However, the treatment for PA is the treatment for the B12 deficiency it causes, so the treatment for B12 deficiency (whatever the cause) is the same as the treatment for PA.

Here are some links to the BSH cobalamin and folate deficiency treatment guidelines and to the BNF (prescribing guidelines), together with some links to other information that you might find useful, particularly about serum B12 testing once treatment with B12 injections has commenced (some GP's mistakenly use serum B12 levels to assess the efficacy of treatment but these only show that you have injected large amounts of B12 - GP should be looking at symptoms, not serum B12 levels).

Here's the links:

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

Three monthly injections following the loading doses is not the recommended treatment for those with neurological symptoms, so probably a good idea to ask your GP to prescribe every other day injections (as per the BSH and BNF guidelines).

In the meantime you could try adding in some high dose sublingual lozenges (1000mcg) or try B12 nasal spray to see if this helps in the short term. It works for some, but not for others but might be worth a try. Having said that, as before, the recommended treatment in the UK for those with neurological symptoms is intensive every other day injections B12 injections.

Good luck with your GP, let us know how it goes and post again if you need further help or advice.

👍

[Mrs_ in reply to Foggyme]

Thanks

[Foggyme Administrator in reply to Mrs_]

Forgot to say...the injection regime following the intensive B12 injections is every eight weeks - though that not enough for some people (but that's another story).

With B12 deficiency, the right amount of B12 is the amount that gets and keeps you well, and if symptoms return before the next injection and are relieved by that injections, then it's a sure indicator that more frequent injections are needed 😉.

Good luck 👍

[Mrs_]

Thanks again☺